What It's Like: One family's A-Z journey through Autism

Month: March 2016

A1 got off the bus last week and immediately came to find me. This is unusual as it is typically the other way around. “I hate riding the bus. I try to keep my headphones on so no one will bother me….but they even make fun of that” he blathered. A1 is not one to seek out trouble…..but he has no ability to not verbally respond to it when it comes his way. Impulsiveness and rigidity. Such is the way of his ADHD and Asperger’s and as he gets older he gets more and more aware of this but doesn’t seem to have the impetus to make it stop. “It wouldn’t be so bad if even one kid stuck up for me or was on my side. B was making fun that I couldn’t run all the way around the track in gym“. He went on and on….and I nodded…imagining A1 trying to explain at length why his Keens rubbed against his heels or how he was out of breath….stoking a fire that he did not know was smoldering. I did not hear much else until the end. “….and then B said to me ‘at least I’m not a transgender’”. I stood for another moment gathering my thoughts and wondering what A1 was thinking as I just stared at him floundering to find something to say. I took a slow, deep breath, “and what did you say when he said that?”. “I told him ‘If you think I’m cute, you can just say so…..’”.

Bam. He didn’t deny it. He didn’t admit to it. He didn’t give the other boy the power to use that in a way that would have inadvertently bullied anyone else in earshot. He shut that shit down.

I am sure if my child had the ability to remain quiet, I am sure he would. However in that moment I have never been more proud of him. He is potentially the coolest person I know and possibly not as vulnerable as he feels….and it’s not because he is 12 and has shoulder length black hair with Manic Panic lizard green tips. He understands what it means to be transgender. He also doesn’t understand what the big deal is and why “adults can’t get over it either”. He had several options of comebacks and recognized that given the slurs thrown his way there were many cruel things he could have said but chose not to. A1 is confused for a girl a lot. Though we talk about it, he tells me he is not transgender nor does it bother him when people think he is a girl…he says he knows it goes with the territory of having long hair. My aspie tells me he is lonely, he tells me he knows people think he is weird…but he lives his life being true to himself, doing his own thing, wearing what he wants…and unapologeticly giving zero f’s. And one day…when adolescence has passed him by I am certain he will come out the other side being a better person for it.

So North Carolina…in light of your clamoring last week to pass the adult equivalent bill of bus bullying LGBT people…my 12 year old with developmental issues gets it…why don’t you? While we are at it…here are 12 other ways he is cooler than you:

He has mad Etch-a-Sketch skillz

.

2. The element of surprise

3. He also sets his own agenda. But way better than you.

4. Visual cues for piano practice? He scoffs at those….

5. He tells it like it is. And obviously is learning something in language arts on occasion.

6. He expects quality. And he will wear it wherever he wants.

7. Oh. He’ll do his homework alright…

8. This

9. Sure, he’ll write your silly story….

10. years and years of fashion….(not to mention his real dad is Tommy Lee)

There is a large manila envelope still sealed sitting on my desk. No matter how much I stare at it it doesn’t:

1. Spontaneously burst into flames

2. Disappear

3. Take care of itself.

It does not contain a subpoena, a warrant for my arrest or an eminent domain letter. It was not delivered certified mail or by official messenger. It was hand delivered by my 6th grader because the teacher very graciously contacted me ahead of time to ask me how I would like the prior written notice papers from the last IEP meeting delivered so I could sign and return them in a timely manner to the school. It has been sitting and judging me silently for over three months now as it sits untouched. I am reduced to a Pavlovian dog except my bell is an envelope and my saliva is anxiety. A crippling-can’t-get-any-thing-else-done anxiety. And I rationally know there is likely nothing in that envelope that should really cause this kind of response. But that’s the thing with phobias or irrational fears and trauma response. Yes…I said trauma response. Often times prior experience attaches itself to something innocuous and we then pair our previous response with a neutral stimuli and generalize it over time. Caller ID with the school prefix, email and now apparently manila envelopes have become the manifestation of years of battles, blockades and having my already fledgling parental competency called to the carpet. For me….my defining moment were words uttered in a meeting 7 years in….but 3 years ago: “Its not fair for one (A2) to get more just because of your parental advocacy” (which was agreeable…but in a whole different way given we were discussing data collection that was reportedly correct, not collected by me…and concerning). Its silly I suppose if you are the one who stuffed the envelope and have no knowledge of my defining moment or my other, more academically impaired child. She certainly must be wondering about the warning likely issued by the elementary school about my hypervigilance because the experience she is having is the opposite. A parent who is late to answer emails yet bizarrely will parse apart data collection in an IEP meeting….and be spot on why it was taken incorrectly must mess with her own schema of special needs parents. I have learned to become a very hands-off parent in hopes of preserving my own life in the last year. I have a double-decker weekly pill case that houses my capsules of life extending medications that would impress most of the AARP crowd. Yet I am not yet even 50. Years of sleep deprivation and external stress can only wear so long in a genetic cesspool.

So there it sits….but not without words…it screams to me every day over the din of my responsibilities but I am strong and I can withstand long term, unfocused wailing.

So…I leave you with 3 truths….

A. I am human.

B. I love my child more than anything I could have ever imagined.

C. I am preparing for an uncertain future in a time that I will no longer be here to advocate in a world that does not see my child as perfect as I do.

…and there are things that get in the way of of the co-existence of Notions A, B and C. Sorry about the envelope.

I have no idea how to work our TV…so I have to ask my children to leave it on every Saturday evening so I can watch Saturday Night Live. I often wonder if I watch it because it is the only time I don’t have someone whining at me that its their turn. Last night between forcing my eyes to stay open and shoving a handful of popcorn in my mouth SNL aired this skit:

Once I moved through being perplexed why a star wrestling champion would have a life long goal of losing to someone with special needs I realized what it really said. Which was equally as perplexing and disturbing.

Since this has been so fresh on my mind recently I wondered….is the problem more about douchy people who want attention for being decent human beings or is the problem more a media and journalism issue? I pondered this just a bit last week as well when I blogged about Donna, an unsuspecting fast food worker who treated my child with a severe language disorder and autism just like any other patron. In our case Donna is completely unsuspecting that so many people now know and respect her because of her act….and it truly was an act that occurs far less in our world than one might think. (https://runningthroughwater.com/2016/02/26/random-acts-of-dignity/). The sensationalizing of reporting overly heroic gestures to include those with special needs is a reflection of our world. Hollow good deeds and instantaneous 15 minutes of fame is raising the wrong kind of awareness folks…but it sure makes people feel good and it garners thousands of clicks.

Please…do not misunderstand. Us parents are caught up in a catch-22 vortex. Watching A2 join in to a neighborhood kickball game only to see the 9 year old neighbor run just slightly slower to retrieve the ball as A2 runs to his base is amazing. But he DOES run to get the ball and he has gotten A2 out sometimes. The difference is that its not a one time thing. A2 can be told “see you tomorrow” as an invitation to join in again. And that 9 year old isn’t walking around to his friends saying “wasn’t that so nice of me?”…at least not in front of A2 or the rest of the world to be overheard turning a regular experience into a charitable yet humiliating one. I love the idea of having my little guy being an equal part of the game….I even love the idea of the kind gesture of a child making him feel special during that game….I don’t like the idea of him being seen as a charity or a headline because of it.

And that is all. Thank you Saturday Night Live and Jonah Hill for showing how ridiculous that is. Go Tigers.